Thursday, May 31, 2012

Fainting: The Final Frontier ( and Neurally Mediated Syncope)

The final frontier. 
These are the voyages of the vertically impared, set out to reach new heights of embarassment - flashing panties and falling where no one has fallen before. 

(Dooo-do-do-do-duh-duh-dum dhuuuduum!) <----That was Star Trek Next Generation music/refernece for those of you that happen to not be nerds.

So lets talk fainting.  I have been writing furiously for the new Non-Profit I am helping co-found (Dysautonomia International - website coming soon!), and by far the most difficult subject to summarize into a consise, easy to understand format was syncope and NMS (neurally mediated syncope).

So, here is a brief run down on fainting and fainting related dysautonomia disorders.

Syncope = Fainting = Passing out.  This means you have lost consciousness, or have come close and have gotten horizontal in time to prevent the actual faint, otherwise known as "pre-syncope."  This happens because there is not enough blood in your brain.  Many perfectly healthy peeople faint during their life time, and it is a one or two time event - and they have no other health issues causing it or as a result.  Or - it can be a sign of something serious.  There are many types of fainting, the most common being vasovagal, or reflex fainting.

Saturday, May 12, 2012

Save the Drama for Your Mama (and the Grinch)

I am fairly new to the Facebook online support community for Dysautonomia and POTS.

This has nothing to do with this post. But I like it.
I have been a member of DINET for years, but stayed away when I was feeling well - it had become depressing and was scaring me that I would end up like others on the forum (ironic, since I now am!).  But the forum was always kind, safe, supportive, and closely monitored - and I feel the people on there are super nice and not the types to attack others who have differing views.  Nothing has changed, if you are looking for smart people to help you navigate resources and deal with dysautonomia, you should check out the forum.  I became active again (it had been so long I had to re-register!) while half dead after all my pulmonary embolisms and in the hospital in early 2011.  I'm glad I did, and I still am on there a few times a week reading and sometimes posting, because it is such a great place to find support.

After getting out the hospital last fall and becoming a Twitter fanatic, and realizing that I was not going to be out running marathons any time soon, I found a whole support network of tweeps as well.   This is another valuable resource for chronically ill of any kind, just pick your disease and search it, and loads of people and tweets come up.  I use #POTS, #Dysautonmia, #spoonie, and #chronicallyawesome the most.

Wednesday, May 2, 2012

Finding Your Cause: The Project (need your help!)

I am on a "Find your POTS cause" crusade, which I think actually applies to Dysautonomia in general as well.  I have a plan for compiling a large printable sourced guide that you (and I!) can hopefully use to try and navigate the diagnosis process and make it a bit easier.

So this will be a multi- part process, and I need your help!


  • Part 2 will involve adding the appropriate testing for all the causes listed in part 1, and separating this into a new printable guide.  If you are up to helping on this, please contact me!

  • Part 3 will involve personal stories of people living with these diseases, causes, and issues related to POTS.  I'd like to feature a brief (or long if you prefer) write up on a persons journey to getting their cause diagnosis.   PLEASE CONTACT ME TO IF YOU'D LIKE YOUR STORY FEATURED!  Stories of success and hope are needed as well! 


    Thanks everyone, and much of this will hopefully transition over to the new Non Profit I am founding, Dysautonomia SOS.   More details on that coming soon.  Lots of work going on behind the scenes, very exciting stuff!



Tuesday, May 1, 2012

Hopeful Dysautonomia Video from Lette!

This is Lette from Irish Dysautonomia....and I LOVE THIS VIDEO!  There is hope for everyone, and some very wise advise in this video, watch the whole thing if you are up for it!

I have had periods of remission as well; and know that food, physical activity, and not becoming depressed by living on the support group boards are all important factors in improving quality of life. Remissions and recovery DO HAPPEN! What has helped me currently in my yucky state of full on POTS/Dysautonomia is trying to help others empower and educate themselves (and myself), and finding BALANCE. Wishing you all a HOPEFUL day! --Claire